Autism diagnosis and the change it may have

Working for myself has been a double edged sword tbh. I often found myself in uncomfortable situations and can't help be quite honest in situations (and while I actually think that is right apparently the world does not always agree...).

There have been too many times to count in the last few years where I have avoided and excused myself from situations simply because I couldn't cope with things. Most of these situations I kept to myself in the past so while on the surface it has seemed stable on the inside it has been anything but for large periods...

I think I have found this forum at the right time too. I am going through some changes with my work and I will be moving in the summer too - change makes me uncomfortable, stressed and forces me to go into overdrive in many things... so I hope being able to be honest about it in advance for once will help and make a difference!

I started to ponder about what I lack and ended up feeling quite depressed if I'm honest. I have also has some recent conversations with my brother which have been extremely difficult because of a lack of response and the process we go through. (At times I literally feel like I want to scream out loud and it takes a lot not to!) Then I end up feeling exhausted at the end of the day...

But rather than ponder what I am lacking I have decided to try and focus on what I am good at. I am not a professional writer in any stretche of the imagination. However I do seem to possess some skills in this area (also related to some of my previous charity work) - it has been a revelation for me! When I get stressed or especially when I can't sleep at the minute I am trying to write poems, really just as a way to express myself really... I have found it helpful.

Thank you very much X_Force, it’s important to have loved ones around us and people we are comfortable with definitely. My partner also has to put up with my rigid approach to life, no sudden ideas to go places because I haven’t had a chance to think about it etc my dislike for parties and social situations which involve a perceived natural ability to blend in and mimic others subconsciously, I can’t do that either way because frankly it’s that forced I feel a little sick and not true to myself who is then ashamed of having to try to “fit in” because I’ve been reminded of what l lack. And wow working for yourself must be quite the safety net at times, it’s something I wish I could also do, it’s good to know you’ve made the choice to start to accept yourself! 

Being righteous is a good thing! And who said you can't be batman?!? ;) 

A few years ago I used to do a lot of charity work so I can kinda relate - always been the kind of person who (trying anyway) stands up for causes... 

I think I have been fortunate to work for myself for a while, which made some things easier but in many ways also helped disguise my situation, which makes my current process even more refreshing.

Sometimes when I am in social / work situations I genuinely start to question what I am doing - so although I am (extremely) new to the community I think it seems like a normal reaction... whatever normal means eh...

It was helpful to read your introduction, hope we stay in touch - I think one of the worst potential aspects is isolation, which is why I feel I am quite lucky with my partner! She is very understanding of things and my quirky (or I'm sure at times just plain frustrating) tendencies - if I have learnt anything in the last couple of weeks it is to (try) and be happy in my own skin.

I felt the similar relief around a year ago when I joined and found out I’m not the only “weirdo” or alien. Many people here also say that with the diagnosis they also don’t get any support. It probably depends on where you live. 

Thank you Alien0n3arth, the feeling I get just from others saying they can relate is like years of therapy for me! There isn’t really much official support without a diagnosis I have found so these forums are great for anyone wanting information or just to be validated in some personal way, I feel like a boy sometimes, like I’m so frightened I want to curl up into a ball on the sofa with the tv on staying up past my bedtime because I can’t make sense of what’s going on in my life. It’s like someone has replaced the person I thought I was with a meek, uncertain, emotionally confused mess. 

Hi, welcome to the community, I relate to a lot of what you wrote. For me eye contact feels also too close or like someone’s eyes penetrate my soul, especially if they look me from a short distance. I was bullied at school and at home too, that was hard. I managed to graduate but never made a good career. I was diagnosed with depression long time ago. Given depressants but they never helped. They didnt help me to stop feeling not fully grown up and inferior to others. I wish you find connections and support here 

I completely understand - it was a shock to me to when I suddenly realised I could be on the autism spectrum and then got a score on the autism quotient test which showed it was highly likely (42 out of 50)

My realisation didn't come until I was in my fifties, and as I was married and working and although I'd always had problems maintaining friendships and felt out of place at work social functions, I hadn't even considered autism until I saw an autistic woman on a TV documentary and identified with a lot of what she said about herself. Cue my new "special interest" as I searched for information on the internet, read books and found this site where I asked lots of questions.

The only advice I can give is to be patient and to think about what exactly you want from life. In my last job (I'm retired now) I never went to a single Christmas party and I'm glad I was able to be true to myself and not go just to please others. It's your life - do what you want with it.

Also remember that being able to hold down a job for 20 years is a great achievement. 

I wish you well on your journey of discovery.

Thank you Pixiefox, I’m really enjoying the replies I’m getting here, they are all very helpful and interesting to read, any additional information that I was not aware of before is brilliant. Being so new to the idea of myself being autistic is causing me some real deep identity type issues without even having gone to the doctors yet. I think I’m at a stage in my life where because I am unable to change and cannot force something which is alien and uncomfortable I realise that I’m not adaptive. I’m looking around the room at work wondering how all these people go out and meet up outside, I’m 37 and I’m tired of feeling like a freak, not being able to look people in the eye for long and they must notice. They must also notice I have never attended a single Christmas party and I don’t seek out communication as much as others may and will often speak more when spoken to. It’s difficult without proof for me to accept myself as autisic because a huge part of me feels severely undeserving of real acknowledgment and a real answer for why I’ve been in a war with myself my whole life. 

Hi and welcome.

We're all different here and many have gained comfort from a formal diagnosis, while others (like me) haven't got one and don't intend to, but feel that we "belong" in this community.

I can confirm that most autistic adults have a lot of the traits and issues that you describe - including anxiety, depression, social avoidance, a strong sense of justice, perfectionism and a preference for routine, or knowing what is going to happen and when. I hope you find that you can identify with others here and that you find this forum useful.

Thank you so much for this reply, and I am really pleased that it worked out for you in the end despite the excessive time waiting which is completely unfair anyway, If professionals know what autism is it shouldn’t take too long for people to get diagnosed but sadly it does. Many members of my family are diagnosed autistic or going through similar processes at you mention In detail above. My family and friends, friends of friends have pointed out that I may be autistic mostly due to my uncompromising views on the world and thinking I am always right but the major challenge I face is finding people interesting, you know getting positive feelings from personal interaction with perspective new friends. I really dislike clothes tags (it’s like having a needle stuck into my neck) same thing with certain clothes and I am uncomfortable to be bare foot, if I am I tiptoe without noticing sometimes. Sorry if I’m going on but my mind is a little blown as I feel I’ve come to a sudden shocking realisation and things would be crystal with a diagnosis, thanks again!

I was 36 when I made the decision to pursue a diagnosis myself. I was and mostly still am dealing with massive burnout from years of what is known as 'masking' - basically pretending to be 'normal' or hiding the more quirky elements of my personality in order to try and fit in.

This for me was the big motivator. I knew that something had to be causing the massive levels of fatigue and drain that I felt. So, I did the AQ-50 and scored 48/50. That to me was pretty much - yeah I should speak to a GP. The GP made me do the AQ-10, I got 9/10 on that so they referred me. Through right to choose I was assessed and got the diagnosis on 31st of December 2024 at the age of 38. 

I tell you this story to say that your story sounds familiar to mine pre-burnout. Also to explain the reason I chose to get a diagnosis. I wanted to know what was behind the not fitting in and having to mask. Having done the AQ-50, RAADS-R, and CAT-Q tests over on Embrace Autism website seem to have helped provide a good basis for the referral. They actually also gave me some insight into how I saw myself. They ask some pretty deep questions that if I thought about helped me to identify some of my own struggles. Perhaps they might help you too.

I would highlight though that the process is kinda drawn out though. I had to badger my GP at every early stage, and then had to complain when the Countess of Chester Hospital kicked back my referral after about 8 months. I used the NHS Right to Choose option (in August of 2023) after that which sent me to Psychiatry UK. They sent over some questionnaires, e-mailed me regularly just to tell me that I was still on the waiting list, and then after about 16 months I finally got my assessment with a psychiatrist. So, start to finish the process took me around two-years to get the diagnosis. I am currently badgering my GP again because I want some follow-up from them. 

All this to say, aside from the great info Bunny and Overwhelmed have shared, good luck and I hope sharing the process might be of some use in seeing what might lie ahead for you.

Hi and welcome to the community!

Many of us here are "late realised" and/or "late diagnosed", so you're in good company! :)

Whilst the information that you've shared could be consistent with autism, we can't offer medical advice here, and the professionals involved in assessments also consider a lot of additional information.

If you haven't yet seen them, you might like to read through the various resources in the NAS's recently revamped diagnosis hub:

NAS - diagnosis hub

They cover all stages of the process, with each section containing several articles relating to that stage:

• Before diagnosis
• Assessment and diagnosis 
• After diagnosis 

For example, these articles (from "Before diagnosis") would perhaps make for a particularly timely read:

NAS - Signs that a child or adult may be autistic

NAS - How to request an autism assessment

If you live in England, you might particularly like to read about requesting an assessment via Right to Choose (which enables access to private providers who might have shorter waiting lists than the NHS, but with your referral and assessment still fully funded by the NHS).

Some examples of Right to Choose providers are listed here, for example:

ADHD and ASD assessment – Right To Choose

The NAS articles include links to some screening questionnaires that you might like to complete, to get a better idea of whether your suspicions might be correct. You might prefer to use the website below for this, rather than the versions linked in the NAS article.

The site provides some very useful commentary for each questionnaire, and also enables them to be completed online (with scores calculated for you), saved as PDFs and - if the results support your suspicions and you decide to seek a formal diagnosis - printed off to take with you to the GP.

The AQ-10 or AQ-50 seem to be the most frequently used / required by GPs in support of NHS referrals. (RAADS-R might also be helpful, although some recent research has thrown doubt on its validity as a screening tool):

Embrace Autism - screening tests